Read this and found it very informative, especially if you are wondering about how to progress / change / monitor your meds /disease during this time. I found it very reassuring and it will certainly support my next discussion with my Consultant.
Hope you find it useful. Let me know as I've never posted a link before and fingers crossed it works!!!
Best wishes to all.
Thanks so much for sharing Rosie. Worked well and really interesting to read.
Hoping you have a really productive chat with your consultant about your meds when you next speak with her.
It is hard at the moment isn’t it as it seems from posts that access to our teams and starting new treatments is a very individual experience. I feel very fortunate to have continued to receive excellent support from my rheumy team to date. Shall see how my telephone consultation goes next week. It has made me be more organised and be better at documenting how things are for me over the last few months. I’ll make sure I have a note of any questions I have too.
Thinking of you x
Yes, I agree that it appears we are both lucky in being able to access our Rhuemy teams so readily. Had telephone appointment on Friday with nurse. Have come off Leflunomide as it has created havoc with throat and mouth, let alone blood pressure issue. Am waiting to see if it abates over the weekend, if not will seek help from either RA team or GP as my blood results should be in. (Bet they make interesting reading) Trouble with LEF is that it has such a long half life, I'm not sure how long it will take to go or if it has set up an infection that needs antibiotics.
Indeed, I made clear notes for my chat and underlined key areas in different colour so ensured that could quickly scan I had covered all the things I wanted to. I now keep a diary, noting good days (rare) and bad days - with details. Such small pleasures!
What a truly awful time you are having Rosie. I am so sorry to hear this. Hoping that a way forward can be found for you really soon. Looking very likely that you are needing to go down the biological route. Thinking of you x
And you! Let us know how your consultation goes. I do so hope it goes well. x
Thank you for sharing.
I’ve seen many people online who were sent shielding letters despite not technically meeting guidance. I know there were some who were told to shield based on clinical judgement but, understandably, rheumatologists cannot screen every single patient. I noticed the document speaks about being over protective and in some cases, every patient on a DMARD or biologic were sent a letter. For many people, being told to shield when not required is very distressing and has a massive impact on household finances, careers and education. They feel they should not attend work nor send their children to school nor should their partners work.
Yes. It has led to confusion and distress for many. It is certainly a complex area and will be made more so when people take their individual health and home circumstances into consideration. Vulnerabiltiy will also have fluctuated from some of us over this time. I am, I think, more at risk than at any point during lockdown but you won't find much about active disease, med reaction etc on flow chart! Just my luck at the moment I think!
Very interesting and frustrating too.
I was part of a project team to change the nhs (!) and that involved telemedicine and virtual appointments. The whole thing collapsed and the lady leading it left to set it up in private medicine.
Partly why it collapsed was due to consultants resistance. It often is. Also because IT was all over the shop and still is and, endless meetings where nothing moved forward and it fizzled out.
Think how things could be now if that had progressed then. I left the nhs in 2008 🤔😩😩😩😩
Sounds just like my field, education! Frustrating and tragic waste of both human and other resources.
It really was. The money wasted in itself was huge. Wasted opportunity was much bigger. Oh well guess they've got there in the end. Hopefully!
Thankyou! Interesting reading in this link. x
Interesting reading for us that take Sulfasalazine.
Very little help from my rheumatology team. 
Six months on Enbrel and good feedback from Rheumatology appointment.
Rheumatology patient survey from the University of Cambridge and patient groups
Do you have problems getting Help from your Rheumatology Dept.?
